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Rare Disease

Impactful Storytelling: Rare Disease Content that Resonates

by Howard Klein
President of Lanmark360


August 23, 2018

In the rare disease space, the concept of awareness is vital. While awareness is a key element of any marketing strategy – after all, your target audience won’t engage with your product or service without having a base level of awareness, it takes on a whole new level of importance in an effective marketing plan in the rare disease space.

Everyone is well aware of cancer and the many ways in which it can manifest in patients and its massive toll on their quality of life. However, rare diseases such as Duchenne muscular dystrophy (DMD) remain completely unheard of among the general public. This is largely due to the fact that there are tens of millions of people diagnosed with cancer each year; while the worldwide total of individuals with DMD is only around 100,000.

Ultimately, marketers, non-profits, drug manufacturers, and the loved ones of rare disease patients need to get creative and think of impactful ways to properly educate and make a connection with their target audience. They should be sharing the story behind their disease, but what kinds of content are best suited for this goal? When developing content for rare disease advocacy there are a few choices that can convey a story that truly resonates.


 Infographics have become a very popular content type in recent years, and are an excellent choice for rare disease content thanks to their ability to convey statistics and other information in a visually enticing manner. The best infographics for rare disease advocacy can take statistics or other pieces of information that might not seem impactful at first and convey a brief yet powerful message.

Continuing with the DMD example, 100,000 patients across the entire world seems like nothing compared to tens of millions of cancer patients. By using an infographic you can visualize how that is nearly double the number of seats in Yankee Stadium, or triple the population of the entire country of Monaco. If executed correctly, this information will be an “instant get” – communicating the statistical significance of those suffering from the disease which can build an emotional connection with the target audience – necessary to drive advocacy.

Blog Posts ‘Journal Style’

 “Journaling” isn’t just something everyone tries in their high school years; it can be an incredible vehicle for rare disease content. By having a sufferer of the rare disease (or a parent/loved one of the patient in pediatric cases) develop blog posts in the style of a traditional journal, you’re able to offer the audience an inside perspective into the life of someone living with that rare disease and help illuminate the impact it has on their everyday lives.

Detail the amount of time each day that has to be dedicated to administering treatment and describe how, what many consider to be common parts of a day, become very difficult for those living with that disease – just two examples of how this content type can create a very personal story.

Better still, this kind of content lends itself to an ongoing series – with weekly updates providing different insights into the patient’s life and more opportunities to foster a connection with the target audience.

Video Interviews/Testimonials

 With over 500 million hours of video watched on YouTube each day, and 87% of online marketers using video content – in 2018, videos are arguably the most in demand and the most popular format around. Video interviews or testimonials have the potential to be the best kind of rare disease-oriented content available. We’ve all heard the phrase “seeing is believing” and videos can present the story behind a rare disease in ways that few other content types are capable of.

There is a variety of different angles to take when considering a focus for one of these videos – each of them sharing a unique and valuable story: Sit down with a patient and ask them what it was like when they learned of their diagnosis or, similar to the “journaling” approach discussed earlier, ask how their disease has changed their day-to-day lives.

Don’t limit ideas based on discussions with patients only, everyone from family and friends of the patients to healthcare professionals and clinical researchers experienced with the rare disease and its history can offer incredible perspectives that can further resonate with your target audience.

Close friends and family of rare disease patients have a distinct point of view, in that they’re caring for a loved one living with the disease and can convey how far-reaching the impact caused by these diseases can have on the lives of people close to the patient. Additionally, healthcare professionals and/or clinical researchers involved with the specific disease can share the challanges of advancing research towards a cure or recount the history of the disease within the medical field. There are many more different avenues one can explore, but as long as the story being told is educational and human, you’re on the right track for making something special.

Would you like to learn more about rare disease content and marketing strategies within the rare disease space? Get in touch with Lanmark360 today and check out our agency capabilities sheet here.

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